“Warrior Mom.”

That’s what one of my inspiring bracelets says. A simple gift during our chemotherapy journey that reminded me I am strong; I am flexible; and I am exactly where I need to be. Little did I know that bracelet would mean more now, almost two years since my daughter Bella was declared NED (no evidence of disease), than during the actual fight.

Since hearing the most liberating words, “Your daughter is cancer free,” life has not been rainbows and butterflies.  This is something that no one tells you when you find yourselves in the thicket of cancer—your life will not return to where it was prior to diagnosis day just because your child is NED.  For some, the constant fear of knowing the cancer may return lives in the shadows of the night.  For others, there is the visible disability left behind from the cancer after they've been declared NED. And for a small group, like us, we are left with issues that are not visible to the eye, but continue to dictate our week-to-week lives.

Bella was diagnosed with a very rare pediatric cancer: stage IV hepatoblastoma, or liver cancer, at just 4 years old. She underwent eight total rounds of chemotherapy, a surgery to remove 2 lung metasis, a liver transplant, and another liver transplant after the first one failed. For a fuller picture of our journey with Bella, read “Bella’s Story – to Change the World.”

It took some time to adjust to life post-cancer and liver transplant. There’s no manual on how to adjust; how to find your new normal. Instead of looking at the big picture, we found that sticking week-to-week works best for us. Here is a glimpse of what our life has looked like since Bella was declared NED.

Medications a few times per day

Immunosuppression meds need to be given at a set time in the morning and evening. This meant I set alarms on my phone to ensure we wouldn’t miss a dose. If we were traveling, we packed pill boxes precisely to ensure we wouldn’t run short. I was so thankful Bella was able to take her medication in pill-form as this made packing for any day trip easier. She amazed me with learning how to swallow pills while inpatient after transplant. She practiced with mini M&Ms and found it easy (and delicious!). I’m still amazed to this day watching her swallow her medications with no hesitation.

Weekly labs

Lab days usually consist of multiple phone calls to verify information and change medication dosage if needed. Occasionally, we go back for more labs within the same week to reassess any concerns. Lab pokes barely phase Bella anymore besides that she has to wake up early to ensure her blood is collected prior to her immunosuppression medication time.

Blood transfusions.

Sometimes we have weeks where labs look great, and we can continue with our week as planned… but then we have weeks where the hemoglobin starts plummeting and Bella needs a blood transfusion. This involves a three-hour drive to the transplant hospital where a type and screen is taken to find Bella’s perfect blood match. Since Bella has had numerous blood transfusions, she has developed antibodies that make it more difficult to find a match for her. It usually takes at least 24 hours to find Bella a unit of blood.

With the history of multiple pokes into Bella’s tiny veins, it’s becoming more and more difficult to find the perfect spot to place an IV. This is traumatic for Bella, even when she has her numbing cream on. Many tears are shed in anticipation of the actual poke. I used to be able to wear my brave face and hold my squirming daughter through the poke, but I’ve been worn down. I now find myself holding Bella close, reminding her to take breaths and hold still, as tears are streaming down my own face. It’s not because the nurses aren’t doing a fabulous job with her—I often see them leave the room with tears in their eyes because it’s just as hard on them. It’s the fact that she has endured so many pokes, which are becoming more and more difficult to get with the first try.

Sickness.

We’ve become ultra-sensitive to that person who is coughing in the booth next to us or in line behind us at the grocery store. Because of Bella’s liver transplant, she has an immune system that isn’t as strong as the rest of ours. A fever means an automatic call to the transplant team. It always, always breaks my momma heart to give Bella the bad news that she needs to be admitted, and she sheds tears before she finds the strength to pack up her ‘essentials’ for the hospital. This is one of the reasons we decided that homeschooling would be best for Bella as she started first grade. It’s been a learning curve, but we have all adjusted and found our routine with schoolwork.

Scanxiety

As scan dates get closer, the “scanxiety” increases. Scanxiety is the anxiety that accompanies the unknown results of Bella’s latest scans, even though she's been NED for so long. It can get intense – insomnia, nightmares, racing thoughts during the day, loss of appetite, loss or concentration, irritability, general fear, physical sickness, or just wanting to spend every minute with my child. When the date starts rolling around, the scanxiety begins creeping in.

Find tips on dealing with scanxiety here. 

To say that we aren’t afraid of liver issues happening again would be a lie. They will always be on the back of our mind- whether liver rejection, infection, or failure. As her liver is foreign in her body, there is always the risk that those issues could happen. This is one of the reasons we don’t take a day for granted; life is a beautiful gift and should be enjoyed daily.

Through our cancer and NED journey, I have found an inner strength that I never realized I had. I found that deep “warrior mom” voice that wasn’t afraid to ask questions, push the boundaries, research at all hours of the day, and be the one constant for Bella. If it hadn’t been for the journey, I wouldn’t have learned how strong of a mother I am; what tough really means. My perspective on life has changed: I don’t stress about those “little” things that once reigned as pet peeves. I am intentional with my time with my kids and husband. I savor the giggles that I once took for granted. I am all for the snuggles, even if it means bedtime is pushed back a bit. I have found myself slowing down and to enjoy the tiniest moments. Even though the journey was difficult and grueling, I’m so thankful for the life lessons it has taught me.

There’s a lot that has changed since being declared NED: many adjustments to our new “normal” routine; more doctor visits, many new worries and fears, but mostly realizing the newfound strength that the journey has given us. For that newfound inner strength, “Warrior Mom” seems like a well-deserved title.